Recent years have seen dramatic advances in both cancer medicine and technology. The intersection of these two rapidly evolving areas was the topic of discussion during the Saturday, May 30, Education Session “The Challenge to Stay Current: Incorporating Technology into Practice.” Topics related to information retrieval, social media, and the application of technology to patient-reported outcomes (PROs) were presented.
Dr. Michael Thompson
Internet Resources for Oncology
Jeremy Warner, MD, MS, of Vanderbilt-Ingram Cancer Center, noted that across cancer types, outcomes have greatly improved in recent years. In order to maintain and build upon these gains, he said, clinicians must be “professional content consumers as well as excellent providers of care.”
Oncology professionals turning to the Internet for this content will find an unlimited source of information; the challenge is to find the most relevant and applicable content. PubMed now contains more than 24 million citations and is queried more than 3 million times per day. A new cancer-related article is added to PubMed about every 3 minutes, Dr. Warner said, and thus the wealth of information continues to grow. Advanced PubMed search techniques, such as the use of topic-specific PubMed special queries, can reduce the likelihood of obtaining irrelevant search results. Dr. Warner also noted that clinicians may find PubMed Central to be a useful resource, as it provides free access to nearly 3 million full-text digital articles.
Google is also changing the way it presents health information to consumers. Through collaboration with the Mayo Clinic, Google is presenting health information directly in the search results page. This feature also includes an option for feedback to improve content results. Dr. Warner showed attendees examples of patient-oriented Mayo Clinic content that users may see on Google following a search of the term “melanoma.”
“You should realize that your patients—probably before they have ever met you—are Googling their conditions,” Dr. Warner said. “It might be good to get a preview yourself, as well.”
Dr. Warner also discussed Google Scholar, which he considered to be a complement to PubMed rather than a competitor. The goal of Google Scholar, Dr. Warner explained, is to include all written academic knowledge, including reports, court opinions, and patents, which would not be included in PubMed.
Many readers are familiar with Wikipedia, a general resource in which articles can be edited by anyone. Although concerns have been raised about the accuracy and completeness of this digital, collaboratively written encyclopedia, Dr. Warner noted that recent studies have demonstrated the accuracy of Wikipedia, and previous issues with incompleteness have been amended by great improvements. “If you set Wikipedia aside a few years ago because you were skeptical, you might want to think about checking it out again,” Dr. Warner said. Other valuable resources include ClinicalTrials.gov, which provides up-to-date information on clinical trial design and results, and HemOnc.org, which provides information on chemotherapy regimens and dosing.
Another set of websites addresses the role of genetics in cancer. The National Center for Biotechnology Information (NCBI) Genetic Testing Registry (GTR) acts as a central repository that includes genetic test information submitted by companies in addition to practice guidelines curated by the NCBI. My Cancer Genome was designed as a knowledge resource for cancer genetics. Users can find information on a relevant gene’s location, frequency of alterations, and response to drug sensitivity or resistance. Dr. Warner noted that these types of knowledge bases will become increasingly important as the number of relevant gene variants grows.
Looking to the future, Dr. Warner told the audience about the Clinical Genome Resource (ClinGen), currently under development, which he called “a comprehensive model to help interpret genomic information in the setting of various clinical scenarios.” The model will incorporate information from multiple sources—researchers, laboratories, expert groups, clinics, and patients.
Social Media and Medicine
Michael A. Thompson, MD, PhD, of the Aurora Research Institute, discussed the role of social media in oncology. Dr. Thompson is prominent in the oncology social media community, writing under the Twitter handle @mtmdphd.
Although oncologists debate the role of social media, Dr. Thompson pointed out that communication is at the core of interacting with patients, and tools are needed to aid this communication. Mayo Clinic, for example, is a power user of social media because, as CEO John Noseworthy, MD, stated, “Our patients are doing it, so this is where we need to be.”
For clinicians wanting to implement social media, Dr. Thompson provided a few tips to tailor the information to this environment and optimize the signal-to-noise ratio. Following only specific organizations, publications, and associations should provide “a lot of good information and limit the amount of tweets,” he said. Using hashtags and Boolean searches—which allow users to combine words and phrases using “and,” “or,” “not,” and “near” to limit, widen, or define a search—can also improve the signal-to-noise ratio.
Other potential applications of social media include educating patients and providers about new clinical trials, crowdsourcing, and crowdfunding. “We need an educated and engaged public to maintain clinical trials structure,” Dr. Thompson said, and social media is one way to help make this happen.
Laura E. Strong, PhD, of Quintessence Biosciences, Inc. and the School of Medicine and Public Health at the University of Wisconsin-Madison, discussed how technology could be used to enhance collection and analysis of PROs in oncology.
Dr. Strong noted that the benefit of PROs ultimately lies with patients. “The value of patient-reported outcomes,” she said, “is really the value that the patients get from a better understanding of the benefits and risks of the treatment decisions that we can make with them.”
Previous studies have shown substantial differences in how clinicians and patients report certain symptoms, and, in some cases, patient reporting is more strongly associated with health status. Therefore, “direct input by the patient is what we are trying to get to,” Dr. Strong said. She explained that there are challenges to acquiring PROs—questionnaires and surveys can be used; however, completing these tools as specified can be a burden to patients over time.
Another limitation is that PROs may not directly relate to patient outcomes. “You don’t want to just measure something, you want to improve upon what you are measuring,” Dr. Strong said. Performance measures are currently being developed to address questions of outcome.
PROs are being used today in the U.S. Food and Drug Administration approval process to improve patient care. Some institutions have adopted PRO systems in which patients submit surveys online and clinicians receive reports via an electronic medical record.
There is great potential in the future of PROs to improve outcomes for patients, Dr. Strong said, by improving diagnosis, revealing underreported side effects, and identifying new targets for intervention. Technology can aid in the accurate and complete capturing of PROs. Dr. Strong explained that technologic tools may provide a way to capture everyday activities (performance outcomes) as PROs and to monitor adherence. The use of wearable technologies (e.g., accelerometers and other monitors), smartphones, and mobile applications could reduce patient burden, improve data quality, and help identify meaningful data.
For example, Dr. Strong pointed out that current tools assess fatigue by asking questions (i.e., about feeling run down, tired, or lacking energy), but perhaps a wearable device that directly measures activity could be used instead. There are also potential applications with tools such as ResearchKit, an open-source software that uses a smartphone to collect PROs for clinical research. ResearchKit is already being used to obtain PROs for asthma, Parkinson disease, diabetes, breast cancer, and cardiovascular disease.
To illustrate the types of information that might be gained through technology, Dr. Strong described efforts to develop “passive tracking,” in which an individual’s smartphone usage—their volume of text messages and phone calls, voice analysis, and location tracking—might be used to diagnose depression through the use of algorithms.
There are downsides to the increasing use of PROs, Dr. Strong said, including a greater information workload for providers and the potential for a widening gap between patients with and without access to technology. Ensuring that patients remain continually engaged in technology-based PROs is also a challenge. Finally, using technology to prompt measurements might, in itself, influence behavior.
Despite these challenges, Dr. Strong concluded that “the time is perfect for PROs” given the goals of precision medicine and the increasing use of new targeted drugs. “Value is the combination of benefit, cost, and risk,” she said. “For every patient, the relative importance of each factor is different. PROs are critical—you don’t know without asking an individual what is most important to them.”
The ways in which clinicians can effectively use technology to acquire knowledge and communicate with patients and each other is rapidly transforming, and this Session showed a glimpse of what the future may hold.
Watch the session: Visit the ASCO Virtual Meeting website.